Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I'm new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I've seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I've. Even advised to go to the Mayo Clinic in Rochester but I'm really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

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@zinnia55 I do. I wrote here about recently having a tongue biopsy. A scary thing and was my 2nd of 3 biopsies this year. Thank god Breast and Tongue were negative. 3rd 2 weeks ago was biopsy for basal cell which could be more extensive MOHs surgery in April.

You know how there gets to be sooo much going on medically that it gets easier to ignore some of it? It was the oral medicine person who told me I needed to get the thing on my face checked. I have the erosive type. I've been on LDN for a long time (with some breaks for surgery/pain meds.) I rarely have a day without a sore somewhere in my mouth. I am having all my top teeth removed next week, this condition and a few other autoimmune issues (CRPS) have taken their toll. I've wondered tho if having fewer fillings will help. I'm very allergic to nickel, who knows how much is in old fillings.

So you are having issues. I want to suggest - if you have a dairy allergy, and whey is a filler being used in manufacturing, or by the compounding pharmacy you use, that can cause your belly issues.

Or the same with gluten. Gluten is also used as a filler.

Worth checking out. Sadly, because what we get for generics every month changes (whatever is cheapest for the pharmacy's middle man) we can't control month to month what filler is used. I can talk your ear off about the issues with generics, but finding a pharmacy that uses high quality product (I think cold pressed?? - or not, I forget) is key. When I find a manufacturer with the right filler, I have ny dr put that manufacturing company as a must on the script. Then I shop around for the local pharmacy that can get that manufacturer. There are some I just avoid or do much research on. Teva and Sun manufacturing (in india) plants are usually not good depending on the generic.

This is what happens when we get a different say blood pressure meds and every month its a different manufacturer. Our blood pressure can be overtreated one month and undertreated the next.

Like I said, don't get me started on what we don't kniw about our generic meds.

Check whey or gluten filler if you have a sensitivity? I've not seen many with belly issues with LDN - esp at such a low dose? Glad you have an informed doc.
My best

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@bebold Thanks for the info, I did not get thre trochee because it was made with citric acid I stuck with the lower dose capsules that have the naltrexone and the microcrystalene cellulose and that is from a plant source. But I get your point and since this started I dbl check everything I eat. Happily my tummy issues are resolving on the lower dose so I am pretty happy with that! I really hope you find some comfort after your extractions. I had read that metal fillings can cause issues. I appreciate all your insight. it has been helpful. Thanks!

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